Ben’s Friends Rare Diseases Community - February 2012 Monthly Newsletter
Ben’s Friends & Rare Disease Day
Newest Communities
Featured Member of the Month
Ben’s Friends & Rare Disease Day
Rare Disease Day is February 29th (very soon!). We’re pleased to announce that we are now part of a large consortium of non-profits, foundations, and social enterprises working with RareDiseaseDay.org to fight for the needs of rare disease patients around the world.
Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and the National Alliances of Patient Organizations at the national level.
Rare Disease Day is open to everyone – individuals, patients, patient organisations, health professionals, researchers, drug developers, public health authorities. Find out how you can help by clicking HERE.
Let us know how you supported Rare Disease Day by emailing us at stories@bensfriends.org
Newest Communities
We’ve been busy this month. We started two new communities:
LifeWithFabry.org for Fabry, a genetic disease which can cause a wide range of systematic symptoms.
LivingWithNarcolepsy.org for Nacrolepsy, a chronic sleeping disorder.
If you know anyone that would benefit from support for these conditions please tell them to sign up. We would love to be their friend.LifeWithFabry.org for Fabry, a genetic disease which can cause a wide range of systematic symptoms.
LivingWithNarcolepsy.org for Nacrolepsy, a chronic sleeping disorder.
Featured Member of the Month
Lisa W. was diagnosed with Trigeminal Neuralgia (TN), a neuropathic disorder that cause severe pain in the face. in November 2011. She works as a disability attorney and has made continuous valuable contributions to the Ben’s Friends community, LivingWithTN.org since she joined. The TN community is very appreciative for all her work in the group. She’s a real inspiration to all of us. Thanks for sharing your expertise Lisa. We are truly proud to have you at BensFriends!Regards,
Ben’s Friends Team
Become a Moderator: If you want to help people with rare disease, please email us at info@bensfriends.org
Share your inspirational story with us atstories@bensfriends.org
Want to hear more often about Ben’s Friends and our inpirational members? Like us on Facebook and follow us onTwitter
Know someone who could benefit from Ben’s Friends? Please forward this email to them
CONNECT
WITH US
on Facebook
on Twitter
on YouTube
Our Communities
· Acute Disseminated Encephalomyelitis (ADEM)
· ADHD/ADD
· Adrenoleukodystrophy (ALD)
· Arteriovenous Malformation (AVM)
· Ataxia (International)
· Ataxia (U.S.A.)
· Atrial Septal Defect
· Autism
· Brain Aneurysms
· Charcot Marie Tooth (CMT)
· Chiari Malformation
· Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
· Crohn’s Disease
· Disabilities
· Eagle Syndrome
· Erythromelalgia
· Fibromyalgia
· Glossopharyngeal Neuralgia (GPN)
· Hepatitis C
· Lupus
WITH US
on Facebookon Twitteron YouTubeOur Communities
· Acute Disseminated Encephalomyelitis (ADEM)
· ADHD/ADD
· Adrenoleukodystrophy (ALD)
· Arteriovenous Malformation (AVM)
· Ataxia (International)
· Ataxia (U.S.A.)
· Atrial Septal Defect
· Autism
· Brain Aneurysms
· Charcot Marie Tooth (CMT)
· Chiari Malformation
· Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
· Crohn’s Disease
· Disabilities
· Eagle Syndrome
· Erythromelalgia
· Fibromyalgia
· Glossopharyngeal Neuralgia (GPN)
· Hepatitis C
· Lupus
-
bensfriends reblogged this from jccolyer
-
jccolyer posted this
